Local involvement networks are due to go live in April but not all will be ready. Critics point to a rushed transition and a glaring lack of detail about how they will work. By Daloni Carlisle
The death of patient and public involvement forums has been a long, drawn-out affair. But at the end of March, the forums and their national body, the Commission for Patient and Public Involvement in Health, will cease to exist. In their place will spring - or limp, depending on your view - new local involvement networks.
Needless to say, not everyone is happy with the move to axe the 394 forums (one for each NHS trust in England), made up of local volunteers. Critics say the move to replace them with 150 LINks (one for each council) is unnecessary, rushed and will leave gaping holes in the system for protecting the rights of the most vulnerable patients.
Others are more optimistic. They point out that the new LINks will have a broader remit, covering social care as well as health, and allow primary care trusts and councils to engage with patients and the public in new and exciting ways.
Most vocal in their concerns are the commission itself and the National Association of PPI Forums - both vigorously resist charges of sour grapes. "We want the new system to work, we genuinely do," insists commission chair Sharon Grant. "It is unthinkable that there should not be a thoroughgoing system for involving patients and the public in health and social care and we genuinely do not want the new system to get off to a bad start. But we have very serious concerns about it, as do a lot of other people."
She argues that PPI forums never had a chance to get going after they were introduced in 2004 to replace in part the old community health councils.
Within six months the government pulled the rug from under the commission, saying it would be abolished but that PPI forums would remain; by 2006 the government changed its mind and announced that the forums would be replaced with new public and patient engagement bodies bringing in health and social services - since rebranded LINks. Ms Grant says: "They have been hanging around waiting to be abolished. Given that, they have done a good job."
The Commons health select committee report got to the bottom of the Department of Health's reasons for axing PPI forums and the commission. In a March 2007 report on patient and public involvement, MPs found the forums were unrepresentative of their communities and not equipped to respond to a changing NHS with more providers and tougher commissioning.
There was another critical factor: the failures of the commission, which was bureaucratic, expensive, did not represent forums fairly or respond to their needs. It simply had to go.
Nevertheless, the select committee thought PPI forums should stay. Small and unrepresentative they may have been, but this could be addressed, said the report, and, in any case, there was not a large number of volunteers willing to do work of this type. They were capable too of change and development.
It said: "Once again the government has abolished an institution a few years after its establishment. We are concerned that the government has taken insufficient account of the cost of change. Abolishing established structures and creating new and untested institutions has not proved successful in recent years."
But the government pressed and introduced LINks via the Local Government and Public Involvement in Health Act in October 2007. By November it had published draft regulations, which prompted widespread concern. Given that the regulations have not yet been published in full, the concerns remain - and underline complaints about this being a rushed process.
The commission points to several gaps. For a start, the draft regulations do not give LINks any governance structures. "We don't know what kind of organisations they will be," says Ms Grant.
"The government position is that they will be able to decide for themselves how they want to organise and who their members will be. I have a degree of sympathy with that but you get to a situation where whoever shouts loudest wins. It has to be a democratic structure."
"The government wants to have literally thousands of members of LINks bringing together all local organisations," says independent MP Richard Taylor, a stalwart for good patient and public involvement in the NHS. "How can you handle that sort of number of people? You have to have a core of people who know what they are doing."
Ruth Marsden, vice chair of the National Association of PPI Forums and chair of the PPI forum for Hull and East Yorkshire Hospitals trust, agrees. She also wants LINks to have more teeth - especially in how issues of concern are referred to them. "It says that LINks can operate in any way they like," she says. "It is all very opaque and peculiarly anomalous and I would have thought it could be sorted out. Quite honestly, I think they are just in such a hell-bent rush to get to the finishing post that they have not had time to do it."
Both the commission and the National Association of PPI Forums are concerned at the absence of plans for a national body to replace the commission. It is not clear how disputes and failures by LINks will be resolved or regulated, says the commission, nor who should provide training on a national basis.
Recent parliamentary answers by health minister Ann Keen seem to provide a glimmer of hope. Of the£28m allocated to local authorities to set up LINks, the DH is holding back£1m apparently aiming to set up a national body.
There are big concerns too about how much power LINks will have when it comes to demanding access to health and social care premises - especially in private sector organisations. Initially these appeared to be excluded, meaning many facilities providing health and social care could, if they chose, prevent patient and public representatives visiting and checking up on them.
Richard Taylor and Lord Howe are leading the charge on this as the draft regulations come up for debate. Although LINks may get more access, it currently looks as if it will be by writing access into contracts with private organisations rather than a right in law. Mr Taylor, who also leads the all party parliamentary group on PPI, says: "It is crucial that these bodies have access to monitor and observe them and get comments from staff and patients. To have to apply for agreement on each occasion is absolutely out of the question."
Then there is the question of transitional arrangements. Under the legislation, councils are charged with finding a host to run the LINks on their behalf. If they can find one by 1 April, all well and good. If not, they enter transitional arrangements and have until September to appoint a host.
But there are a couple of flies in the ointment. Councils cannot sign a contract with a host until the regulations are published and these are not due until "early March", says the DH. Nor has the detail of the transitional arrangements been finalised.
Information about how many councils will be in transitional arrangements is thin on the ground but indications are that it could be as many as two thirds of the 150.
Ms Marsden warns: "There will be hardly any LINks established on 1 April. There will be a gap."
The Local Government Association, which welcomes the ideas behind LINks, was not able to provide a figure but did say: "Above all else we are committed to ensuring the best possible hosts develop to support the best possible LINks. To that end we would support an extension to the transitional period if doing so helped realise that goal."
The DH remains upbeat about the prospects for LINks. A spokesperson said: "LINks will make it easier for more individuals and local groups to say what they want, to talk with the people who run care services and to scrutinise their work. LINks will aim to build on the good work of forums and will have similar powers to hold local services to account.
"However, a LINk will cover all the publicly funded health and social care services in an area - no matter who provides them. LINks should also enable more people to have their say."
The NHS Confederation is also optimistic - although it tempers this with a warning. "What has been missing over the last few years is an understanding by the public about how to get involved with their local NHS organisations," says deputy director of policy Jo Webber.
"We need a system that stays with us long enough for people to be clear about what impact they are having."
In the final analysis, Ms Marsden is also optimistic, largely because most PPI forum members remain committed to the principle of patient and public involvement.
"I am optimistic, not about government planning and how it will all work, because it's been an unfortunate scramble, but the patience and commitment and resolution of our members does give me some hope."
LINks can help make commissioning world class
LINks will be vital for PCTs as they try to become world-class commissioners.
That, at least, is the view of Penny Spicer, head of public involvement at Nottingham City teaching PCT.
"Some of the competencies in world class commissioning are very specifically about community engagement," she says. "I think successful and positive relationships with LINks will help us meet that agenda."
She sees LINks helping PCTs to engage with seldom heard groups, for example through working with residents' associations. She also hopes they will address the democratic deficit and give PCTs a clearer mandate. She says: "LINks will allow us to commission much more effectively and sensitively and in a fair way that takes into account inequalities."
Bradford forges ahead
In Bradford, work is well developed on LINks. The council has identified (but not made public) a preferred bidder to host its network and it is 99 per cent sure a fledgling LINk will be operating by 1 April 2008.
Peter Marshall, performance co-ordinator for the council's early adopter project, says: "There will be a start-up process but we hope there will be a presence, someone you can ring and talk to. Work will start on 1 April."
He is excited by the prospect as, for the first time, there will be a PPI body that looks at the whole patient experience and not just part of it.
There is a lot to do, he admits and one immediate priority is to retain the experience of the outgoing PPI forum as well as bringing in fresh faces from the voluntary sector.
Another important task is to develop written referral protocols.
He says: "As a local authority we don't want just to write a contract with a host. We also want to look at what we can do to make this work."